Gerardo, can you tell us about your family?
GERARDO: There are four of us: myself, Gerardo, father of Pablo and Daniele, and Rita's husband. I'm 53 and I sell confectionery products. Rita is 48 and stays home—perhaps against her wishes. Pablo is 25 and attends the Vaccari school. Daniele is 22 and studies political science at the university.
Rita, how do you spend your days, and what role does Pablo play in your life now?
RITA: I'm much freer now than when Pablo was small. I've gained so much more experience and peace of mind in managing my life. He still takes up an important part of it: at seven in the morning I have to get him ready—dress him, wash him. While he eats breakfast I get myself ready. That's when he's not agitated; his emotions sometimes keep him from eating, or he needs his inhaler for an asthma attack. Pablo can't do almost anything on his own. He can eat by himself, but he needs help with everything else. Then I drive him to the minibus and come back home.
My days. When Daniele is home, we have beautiful conversations and beautiful arguments. We clash easily—his room is beyond description! Sometimes I listen while he repeats pages from his exams; it helps him. Then I organize my work but keep some time just for myself, without which I couldn't survive. During those hours I mostly read, especially psychology books. I arrange the housework as I please: I can read at ten and dust at two. Otherwise life becomes hard for me. I prefer to alternate, to vary things. I have fixed times for Pablo and everyone else; when I'm free from those, I like to do as I wish.
It's my lifeline. Once a week in the morning, I go visit Maurizio. I've also made contact with another mother who has a very sick child. Maurizio is a treasure—three years old, very small for his age. He has no arms or hands, just two tiny fingers. He doesn't speak or sit up. But he's so tender! Now he's starting to recognize me.
I went the first time with Rosa, another mother. We met Maurizio's mother, and it brought back memories of when we were in her situation: alone! I committed to visiting him once a week, staying with him to give his mother some relief. It's better now that she's gotten him into daycare.
Other mornings I go out, meet the neighbors, talk with everyone. There's a woman with a little girl, and now she's expecting again! "Another one?" I asked. "Yes!" I love pregnancies, they move me. Every time I think... it could happen... unfortunately they keep being born. Gerardo and I wanted five children! Sometimes I visit my mother—she's 79 and needs help around the house. Once a week I meet with other people to discuss our problems, guided by my sister. I've also taken a psychology course, not to dwell on the past, but to move forward.
Pablo comes home around five, and then I have to take care of him and the others.
Daniele, has Pablo's presence shaped your life as a child, as an adolescent? How?
DANIELE: Very much, enormously. I don't know what I would have been without this situation. I ask myself that often. What would my relationship with an older brother have been like if he weren't... the closeness that never existed between us. In childhood, his presence definitely shaped me a lot: the atmosphere in the house. But I remember in the evening on the couch feeling very protected—the family unit was reassuring.
PABLO: I'd like to have someone by my side, a girlfriend who loves me... I'd like to live in the countryside forever.
As a teenager, at certain moments I remember having violent reactions, especially toward Pablo. I often wonder what life in this family would be like if he weren't here. When he's away at camp, I enjoy life much more. Dinner is later, not at eight sharp; there's more peace; you can clear the table at your own pace, watch television as you please instead of doing a thousand things: always the same routine, moving the wheelchair, opening the beds, tidying up, getting him to bed. Even though it's true they don't ask too much of me.Rita, can you still manage everything with Pablo on your own?
RITA: It's a matter of the mind. I remember when I was depressed my body couldn't manage. If I'm mentally well, at peace with myself, I can pick up Pablo and carry him. Apart from the usual aches and pains.
DANIELE: There's so much more to say I could talk until the day after tomorrow. Many things have been positive. I think the sensitivity I have, I wouldn't have it if it weren't for Pablo. But I realize the same sensitivity exists in people who haven't had my direct experience. I have a friend, Riccardo, who hasn't had my experience, but he has the same sensitivity toward Pablo, maybe because he's lived so much in this house with us. He helps us. He's my schoolmate. With girls, when I was younger, I had a problem bringing them home; I was always bothered by people looking at him. Now I don't have problems anymore.
RITA: I remember when Daniele was in first grade, one afternoon we had to go speak with his teacher. And we went with Pablo. People stared at us, and you, Daniele, asked me: "Mom, why are they looking at us?" And I answered: "Because we're beautiful!"
DANIELE: I don't remember the episode, but I remember the answer perfectly!
Now I get uncomfortable when people are around because you have to stay on top of him, and that annoys me. If he talks to someone, I don't care—he handles it with Pablo. I mind my own business; I'm happy he has his autonomy. With him I like a direct relationship; if I need to send him somewhere, I send him.
RITA: I've gained so much more experience and peace of mind in managing my life. He still takes up an important part of it.
Have there been moments when you said or wanted to say to your parents: "In this situation I would do it differently than you do"?
DANIELE: Many times, and I still do, especially now. For example, I don't agree that they give him a drink whenever he says endlessly "I'm thirsty, I'm thirsty!" He shouldn't make an announcement; he should ask: "Give me some water." When we're alone, he understands and asks me: "Will you give me some water?" Other times, maybe to release some of his aggression, he picks a fight with Dad over nothing and repeats the same phrases endlessly. I would cut it short immediately and take him to the other room. I don't want to hear arguments that go on for hours, because anyway when he needs to let it out, he will—nothing will stop him. So he goes to the other room, lets it out alone, and then it passes. It's useless to have the same conversations I've heard for twenty years: "But he's right, because..." It doesn't help anything.
RITA: And then he won't eat!
DANIELE: So he won't eat!
GERARDO: His fights with me don't make sense. They're outbursts of impulses that maybe come from a bad day, or because he did nothing all day at the center. He repeats endlessly, "You shouldn't laugh because I..."
DANIELE: He has every right to let it out, but he can't monopolize everyone with it. If he lets it out in the other room it's the same thing and we're all better off.
Pablo, what do you think?
PABLO: Sometimes I behave well with him; sometimes not, because he shouldn't laugh. Sometimes I watch television... (moved by speaking, he slides down from his chair. Rita and Daniele, with energy and a whistle, set him straight)... I don't get angry when they start talking, I don't laugh; I listen.
You always let them talk?
PABLO: No, I talk when I feel like it.
Pablo, who are your friends?
PABLO: Romana, and then Lello; then there's a girl named Alberta who picks me up (home care assistant) and takes me on outings with the others, to Bolsena. All together; then we go to the bar. Sometimes they call me on the phone.
Gerardo, what is your greatest desire today?
DANIELE: Anyway it seems I was made for a situation like this... as if I was born for it.
GERARDO: It might surprise you, but I don't know how to answer. I don't have great desires. What I always wanted, I think I've gotten. Maybe because as a child I lacked it, I always wanted a peaceful family—and I think I have one. The rest doesn't matter to me. I'd like to see the children settled, but that's a banal wish, everyone has it.
And your greatest disappointment?
GERARDO: I haven't had great disappointments, except for this dramatic one that I've long since overcome. It's about keeping things in perspective. Even with difficulties always present, I manage to live well with them; I don't experience it as disappointment anymore. I often think about what my family would be like without this problem. I imagine it "lived" more fully as a whole. More as a husband. I'm convinced I haven't fully lived my way of being—a life more dictated by circumstances, and that's a regret.
A deep regret, a remorse...
GERARDO: Certainly I've made mistakes, but they too were a consequence of circumstances. Everything I didn't do well or better in my life, I think was a consequence of that. I have no guilt whatsoever.
Rita, three of your great desires?
RITA: The greatest: a group home suited to take Pablo in. I'd place him there now, because I know he'd be happy, even though I'd feel a bit lost at first, but I'd recover quickly. There's so much to do. Before I die I have to make sure he's settled so he doesn't weigh on his brother's shoulders. All the affection Daniele will give him, he'll give it fully only if he's relieved of this burden. That's how I work with my friends: I give them all the love I can, hoping that each of them, maybe once a year after I'm gone, will think to go give some of it to Pablo.
My other desire: to see Daniele fulfilled. Degree or no degree, whatever he does, I want it to satisfy him completely, and that he can express himself fully. There's another one: I still haven't found what Gerardo mentioned, a full married life, which in a way has always eluded us. Because we had to become parents right away, we never lived our marriage for our own intimacy. Immediately we had to take on roles—me as mother, him as father. We've been married 25 years and we're still searching for something that slipped away.
GERARDO: Keep things in perspective. Even with difficulties always present, I manage to live well with them.
Daniele, your desires?
DANIELE: I live with many contradictions. I'd like to believe in more things, because I'm very disillusioned. I'd like to go into politics someday, but ideologies are finished and have failed. I'd like to find something solid, something to believe in. I have no direction, I'm disappointed by what surrounds me.
And you, Pablo, what do you most want?
PABLO: To have, I don't know, someone by my side, a girlfriend who loves me... when I went to the countryside, I liked it, I'd like to live there forever! Are there moments when things are hard?
GERARDO: The hard moments are boredom, the monotony of everyday life that all looks the same. It's not the moment of drama or a big fight or a chair thrown at the wall. For me, hard moments are when you let yourself sink into repetition, into boredom.
RITA: My greatest desire: a group home suited to take Pablo in. I'd place him there now, because I know he'd be happy.
RITA: Monotony distresses me; boredom destroys me. I'd like sometimes a nice, sweet argument; after a while everything becomes beautiful again.
GERARDO: I get angry out of proportion over small things when I'm already tense, when I can't find something.
DANIELE: When I'm alone in the house, ah, how well I am: I eat when I want, if I want; I listen to music, watch television, have more space. What kills me are the things that repeat, the same answers Mom gives to Pablo, the same answers Pablo gives to Mom. Always the same. You wake up in the morning with him not wanting to go to school (Daniele and Pablo sleep together in a small room) and then a little hammering starts: tap, tap, tap. Every morning it's like that.
RITA: One day when he was so angry, he said to me: "I'd really like to ask God the Father: does he have to explain to me why certain things happen?"
DANIELE: But there's no answer. Anyway, it seems I was made for a situation like this—I think I have the face for it, as if I was born for it!
GERARDO: Before you, there was us. He sent Pablo to us, maybe because we were the right people.
Rita, what mistakes have you made?
RITA: I certainly have made some, and yet I also think I was a brave mother. Think about when I sent him to camp alone for the first time—I didn't know anyone, he was very small. I was always a bit hard in their upbringing, both with Pablo and Daniele. Gerardo was always kinder. Some time ago I listened to a tape of Gerardo telling a little story to Pablo and Daniele when they were small. The story was about an ogre and an ogress. While Gerardo talks about the ogress, you hear Daniele's small voice say softly: "...who is Mom!"
It's true, I had to impose many things on both of them, maybe even without meaning well, because it's nicer to be sweet and coddling. I think I didn't let them get away with anything!
GERARDO: God the Father sent Pablo to us because maybe we were the right people.